Founders of Duchenne UK honoured by the Prime Minister's office

Emily Crossley and Alex Johnson independently set up two successful charities after their sons (Eli and Jack) were diagnosed with Duchenne, the most common type of muscular dystrophy. After meeting each other, Emily and Alex decided to combine forces and their two charities became ‘Duchenne UK’ in 2016.

The charity is dedicated to finding a cure to the disease, focussing on advancing global research and getting treatments into the clinic as quickly as possible. An expert Scientific Advisory Board, appointed by the pair, directs the £5.5 million that Alex and Emily have fundraised over the last 3 years. The charity has directly funded 3 clinical trials and 13 research projects, co-funds 16 clinical trial staff, and spent £4 million on direct research grants.

Emily and Alex are the latest recipients of Points of Light awards, which recognise outstanding individual volunteers, people who are making a change in their community and inspiring others. Each day, someone, somewhere in the country is selected to receive the award to celebrate their remarkable achievements.

In a personal letter to Emily, Prime Minister Theresa May said:

Your tireless volunteer work is having a transformational effect on new research into Duchenne muscular dystrophy as well as increasing the public understanding of the rare condition. Despite the challenging personal circumstances of Eli’s diagnosis, your perseverance in establishing the ‘Duchenne Children’s Trust’ and co-founding ‘Duchenne UK’ is a testament to your shared commitment to finding a cure for the illness.

In a personal letter to Alex, Prime Minister Theresa May said:

Through your inspirational fundraising and advocacy, you are helping to advance new research into Duchenne muscular dystrophy. You should be incredibly proud of your response to Jack’s diagnosis: first by setting up ‘Joining Jack’ with your husband, and then last year through your partnership with Emily Crossley creating ‘Duchenne UK.’ Each day, your work together is helping researchers to move one step closer to finding a cure to this debilitating illness.

Emily and Alex are the 828th and 829th winners of the Points of Light award which has been developed in partnership with the hugely successful Points of Light programme in the USA and was first established by President George H. W. Bush. Over 5,000 US Points of Light have been awarded and both President George H. W. Bush and President Barack Obama publicly supported the partnership with Points of Light UK when it was launched in 2014, which honours shining examples of volunteering across the country.

Regardless of whether it’s a doctor restoring local monuments in her free time, a father teaching young people life skills, or a local musician giving a voice to lonely people, the Point of Light award honours shining examples of volunteering across the UK.

Krishnan Guru-Murthy, Newsreader and Patron of Duchenne UK said:

Emily and Alex are truly extraordinary and inspirational mothers and leaders. They have transformed the landscape of Duchenne awareness and research in a short space of time while dealing with the extraordinary challenges of having boys with the disease themselves. They have brought hope to families around the world and motivated huge numbers of people who had never heard of the disease until recently to join their fight to end this most cruel genetic, fatal muscle waste disease.

Alex and Emily said:

We feel honoured to receive this award from the Prime Minister’s office, in recognition of our fight to accelerate the search for treatments and a cure for Duchenne Muscular Dystrophy. We’d like to dedicate it to our sons, Jack and Eli, and the hundreds of thousands of patients and their families, bravely surviving the brutal daily reality of Duchenne. We started out on this journey to save our sons: we’re now fighting to save an entire community. We don’t believe in miracles, but we do believe in science, and research and in the power of organisations like ours to really move mountains. We are delighted that so many in the community in the UK are joining forces with us - because together, we WILL end Duchenne.

Summit Therapeutics plc have announced positive 24-week interim data from PhaseOut DMD, their Phase 2 clinical trial of the utrophin modulator ezutromid. The data showed a significant reduction in muscle damage and an increase in utrophin in muscle biopsies.

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Summit Therapeutics plc have announced positive 24-week interim data from PhaseOut DMD, their Phase 2 clinical trial of the utrophin modulator ezutromid. The data showed a significant reduction in muscle damage and an increase in utrophin in muscle biopsies.

Yesterday, the new Care Considerations for Duchenne were published. We strongly encourage all parents, caregivers and patients to read these updates to the standards of care to ensure that everyone living with Duchenne has access to the best possible care

We’re pleased to share the latest coverage of Hercules. The launch of the project, with our seven industry partners, has received coverage in 10 publications. HERCULES is collaboration between Duchenne UK, and pharmaceutical companies to increase the chances of patients with DMD of accessing innovative treatments.

Duchenne UK is delighted to have been chosen by Marshall Wace as their charity of the year and to be awarded a donation of $100,000. The donation from Marshall Wace will fund 10 boys with Duchenne on our Tamoxifen Trial.

The DMD-Hub was created by Duchenne UK and leading neuromuscular clinicians. The DMD-Hub is addressing the lack of capacity in the UK for clinical trials in DMD. During the first year of operation the DMD Hub has successfully achieved, even surpassed, the immediate priorities identified through the Newcastle Plan.

We would like to congratulate the Joining Jack team for their recent victory! Joining Jack took a team to the Dubai 7's international rugby competition, and they came back champions! Alex Johnson, founder of Joining Jack and Jacks Mum, tells us more about Joining Jack's victory at the Dubai 7s.

It has been a busy year at Duchenne UK. Our mission is to fund and accelerate treatments and find a cure for Duchenne muscular dystrophy. We look at where we can add value to the drug development pathway, and how we can help to accelerate research that will benefit the whole community.

Today, December 14th, marks the publication of Janet Hoskin's book: 'A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents'. We are offering free copies to families affected by DMD, please contact us to request a copy.

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Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

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